Hi I am looking for some help or probably reassurance, anything really!

[LynnC]

I was diagnosed with WG in June and since then my treatment has been pretty much text book, prednisolone now reduced to 25 mg and cyclo about to be moved from 3wkly to 4wkly. I have also had to have i.v. steroids at most hospital visits as not been feeling much physical benefits and struggling a bit. Have now developed problems with vision and numbness and waiting for outpatient appts re these. My primary problems have been with my lungs and sinuses. However last week I had some symptoms and asked GP to check urine and as suspected it is showing blood in urine. I have to hand in another sample to be checked again tomorrow. I think that it is too early for this to be attributed to cyclo and am worried that this may be signs that kidneys now being affected. I have rheumatology appt on Tuesday for cyclo and can discuss with consultant who is always really helpful. Can anyone offer me any insight and let me know if they had same probems. Thanks for any comments

[Hidden]

Hi Lynn.

I'm sorry to hear you're still feeling the challenges of your WG despite the aggressive treatment regime and as someone who went through a similar scenario 4 years ago I'm aware how worrying it can be.

Unfortunately the variability of vasculitis appears to be such that there is no true text book solution to bringing this damned disease under control and then maintaining its suppression. In my case it took a complete regime (to Rituximab) change before I stopped going down hill. From there it took some months to get things stable and ultimately quiet. Three years on I'm virtually drug free and relatively okay, suffering only from damage caused by the disease when it was active.

My sinuses, eyes, ears, lungs and peripheral nerves have been affected and I still attend Addenbrookes as an 'elective admission' following a referral twice a year for surgery to help open up my bronchus. The most significant event which helped me was having a consultant who didn't have an ego and wasn't afraid to admit his knowledge wasn't as extensive as other, better qualified experts.

My advice would be to push at your consultants (I'd attempt to bypass your GP and deal with the hospital for faster results) and question their expertise. You don't say what level your ANCA is at but assume from the symptoms that the disease is still active. In my opinion after 5 months you should be getting better rather than worse and in my case the delay in admitting the cyclophos/steroid regime wasn't working caused my lungs to become damaged.

Don't be afraid to suggest they liaise with the likes of David Jayne at Addenbrookes, as he and the specialist vasculitis clinic team are happy to work on a consultancy basis with your own specialists if you can't get a referral to see them directly. I appreciate when you're felling unwell it's hard to find energy to fight beyond the immediate but my belief is that it's necessary to take control of our illness and appreciate that it's ultimately you and not the doctor who knows best.

[LynnC in reply to Hidden]

Thank you Martin.. My consultant is really approachable and I am happy with how she is dealing with things at th moment, she always seems genuinely concerned to make sure that she can make ME feel better. Althought I appreciate 'nice' might not be getting me anywhere! She has been seeing me at hospital every 2wks lately just to keep an eye on me. My main concerns are to get my eyes checked out as this is getting worse. I didn't get my ANCA levels at last visit but I will check this out next week. Have you had any previous problems re blood in urine?

[lisa-ranyell Vasculitis UK Volunteer]

Hi Lynn

Sorry to hear that you are struggling with your illness and i know it can be very worrying when everything seems to be going on at once. I agree with everything Martin has said and particularly that you should push for referral to an experienced consultant as soon as possible depending on your location. it sounds like the disease is very aggressive in you as it was with me.

I was with my original consultants for 2 years and had the high dose steroids, never below 30mg, and 11 cyclophos treatments, during this time i lost hearing in one ear, my nose collapsed and i have lung and facial nerve damage. Only by chance did someone hear of a specialist in Nottingham and refer me to him, and he immediately got me onto Rituximab and effectively saved my life.

I realise that it is difficult to be pushy when you are feeling so ill but it is important to keep control of it and 'own it'.

If i can help anymore please let me know

best wishes

lisa

[LynnC in reply to lisa-ranyell]

Thanks for your comments Lisa. It is hard, I have went from a really fit active mum of two who went to gym 3/4 times a week and worked full time to this wreck of a person..however I will get there..I have to!! As I said in my reply to Martin my Consultant is really approachable and I will speak to her next week in more detail. I didn't want to broach the subject of Rituximab as thought I was being too impatient. I will have a good chat with her next week about how ANCA levels, ERP etc are and take it from there. My nose has also altered dramatically in last few weeks and I thought I was imagining it, my husband can't seem to see the difference but I can(he is probably just trying to spare me!!) Do you think I should see ENT consultant again and ask his opinion?

Thank You

Lynn

[lisa-ranyell Vasculitis UK Volunteer]

Glad to hear your consultant is really approachable but possibly still worth asking how much experience they actually have with WG. It is hard work to keep going but you find a balance somewhere, i only work part-time which i manage fine and i rest when i can, still get fatigue even in remission. as you say, you will get there and probably amaze yourself with the strength you have!

difficult to comment about your nose without knowing full situation,mine collapsed over the space of 3 months, started with a hole in my septum which is now completely gone from the upper part of nose leaving big empty chamber. it is certainly worth visiting ENT regularly to keep on top of situation. i have had 2 temporary repairs using thick dermis (skin) to straighten the bridge which has helped, this was done after i went into remission a couple of years ago, with the 2nd attempt last year. too early for cartilage repair.

good luck next week, i am off to start my 5th rituximab cycle a week tomorrow

best wishes

lisa

[Hidden]

@ Lynn. I've been fortunate not to have kidney involvement although I suspect were it not for Rituximab it may well have been the next area in which the disease would have struck. It seems that you certainly have a degree of active disease and I really feel you should be pushing for Rituximab now. A further consideration may be that your PCT aren't 'Rituximab friendly' (i.e. they balk at the cost) and in some cases patients have had to battle for months to get what they need. Sorry to sound harsh but it's a possible reality.

As you've said, having a 'nice' consultant isn't always enough. You need to be sure they are absolutely up to date with the currrent treatment regimes (e.g. Addenbrookes) and will give you what you need.

On the saddle nose issue (which affects far more women than men for some reason) perhaps you could get someone to take regular photos as a comparison?

In addition to your C-ANCA, CRP and EFR plus kidney functions, I'd suggest getting your immunoglobulin levels checked, if only as a benchmark but a word of caution. Biological markers can sometimes be unreliable indicators (i.e. appear 'normal' when there is active disease present) so make sure you combine them with physical symptoms and good old feelgood-factor when assessing your health at any particular time.

Keep us posted with how you're getting on please?

Healthy wishes.

Martin

[John_Mills Volunteer]

Always difficult to follow on what wise Martin has said, just to echo that "test results" are only meaningful when taken alongside clinical signs and symptoms - how the patient feels in themself. Sadly, the loveliest bedside manner from someone with very limited experience is not as good as that from some grumpy old b***er who has successfully treated more patients with vasculitis than most of us have had hot dinners! Having said that, the really excellent experts in vasculitis that I know are anything but grumpy - they are all very approachable and understanding. I had the pleasure today of listening to David Carruthers (Birmingham City Hospital, rheumatologist) and Andrew McClean (Birmingham University Hospital, nephrologist). Both very much on top of their subjects but both very willing to scratch their heads and admit they don't know quite everything, because each case of vasculitis is different - which is where the experience comes in!

[Dbis22]

I can offer you re-assurance. I was in exactly the position as you are, maybe even worse as I had kidney involvement. I'm still here 21 years later! I can only add to what has already been said. In my opinion, based on my own experience I wouldn't wait too long for GPs and Consultants to exchange letters. After a year of this you will know more about your illness than your GP!!

There's just two things I can add :

1) EYES You need to get yourself to an eye specialist asap. If it were me I wouldn't bother waiting for the next couple of consultants. I would either talk to my GP and tell him you want a direct referral NOW or I would simply turn up at your nearest eye hospital as an 'emergency'. I have no idea where you are geographically so cannot help in the respect.

2) ENT I actually presented with ear problems. Had my ENT consultant got moving quicker I would probably not have quite the same level of nerve damage I am having today. While in hospital the Prof. looking after me told me I would have to find myself a 'tame' Ear specialist. He was absolutely right. I had regular appointments and, even though in remission, I always seem to have an ENT appointment booked. To give you some idea I am on first name terms with everyone in ENT!! Get referred to ENT as a priority.

This may all sound very dramatic. I think the bottom line is that you shouldn't sit and wait for things to take their course. My GP at the time I was diagnosed was extremely nice but, looking back, hopelessly ineffective. You have to be fairly tough and I know it's hard when you feel dreadful but you need to do a fair bit of pushing.

I do hope this helps you ..... what you are going through is very scary if you're not used to it. A few years on you will be feeling much better and you'll be much wiser!

Good luck ....

[LynnC in reply to Dbis22]

Thanks for your replies everyone. Have had quite a good day today. Hospital tomorrow and I will certainly chase up all those other appointments myself,that is my mission for the week!

[kath12341]

hi i have wg and have had some bladder kidney problems but no kidney damage had blood and protein in urine when diagnosed could just be that you have an infection try not to worry .